31 July 2009


Its FINALLY cooled down some.

Wonderful =)

And, well, no, that's pretty much it. I'm going to a movie on Monday with Ms. E...

Okay. Sorry I'm boring and have nothing to write about but my life is pretty much sleeping and sleeping right now =P



29 July 2009

Too hot

Today Seattle broke record highs. Actually, it got to the hottest it's ever been dating back to like, 1891. 102 degrees Fahrenheit last I heard. So, I'm basically having flashbacks of Minnesota summer, and realizing that if we still lived there, I might be dead right about now.

Anyways, too hot to do much of anything including posting. My week has consisted of chugging cups of ice water, staying in a tank and shorts all day, and hiding out up in my parent's room, because its only 71 degrees in there.

Pretty much.

I didn't go to Kris's today, simply because it would've been too hot in the rooms for me. As it was, I was getting floppy at dinner. We went to this delicious Japanese buffet. It wasn't the kind with a ton of American food though, which I liked. Many, many different types of sushi, which I had some of. I also had a couple of Japanese pastries, and some other fun good food.

Now, it is time for me to go melt into a puddle of goo.


26 July 2009

A came today

A came over today. We cooked food on the barbecue and just....talked. Talking is fun =)
It...I don't know. It's hard to put to words how special it was to SEE someone with Narcolepsy/Cataplexy. I can talk to people all I want, but until you see someone who's like you, who's dealing with this crazy complicated disorder, yeah. IDK

In any case, I super enjoyed her time here, and I hope that in the future either I'll be able to travel there, or she can travel here.

Now...I shall sleep.
Because I didn't nap today, and I am tiredddd.

Bye bye,


25 July 2009

L's Birthday

It's L's birthday today, and we're having a party for him here. He's turning 3! Its so exciting to look back and see the progress he's made in the last year. You see, he has ASD, or Autism Spectrum Disorder. This time a year ago he wasn't verbal. I think he had like, 10 signs and maybe as many words, if that. He wasn't comfortable with us yet, so we didn't get to interact with him much.

Now, he'll ask to be picked up so he can see the birds. He'll ask you to come play with him in his ever so cute voice. "Bee, Pay?"
He's pretend playing, that is, taking cars and making them drive on roads, making the Fisher Price people walk and talk. Before, he would just line them up.

We got him a table and chair set, some new pieces for his train set, and a little crawl tent. I hope he enjoys it all! I'll update later with how it went.

It was super fun!! I had a blast. And L certainly seemed to enjoy his time and gifts =)
The one downside, it was very hot. So I hid upstairs in Mom and Dad's room with the AC and slept. And later on, B and I had a heart to heart. I've had some rough days in the past week, mostly Tuesday, and B was worried. I love him dearly for it!

Anyways, everything went great and was fun!


24 July 2009


I met A today. She came from Chicago to see me.

She also has Narcolepsy.

It was SUCH a relief to see her. Like, I've talked to her for a while. But I've never met her.

It was good to actually see someone like me. To know she goes through some of the same day to day battles I face. Anyways, I'll have more later, but I need to go to bed.


22 July 2009


Has been slow. Not that I haven't had stuff to say, I just haven't had the motivation to post. Which, also isn't actually because I'm not interested in this blog, I just.....I like sleep. I have been spending a LOT of time sleeping...

Anyways. Yesterday Ash and I took the city bus to the movies, and we saw Monsters vs. Aliens.
It was good! And super cute. After the movie we walked to the mall and hung out in Borders.

Then....today we went and looked at a house. It's not in this school district, so it'd be a new school. But it's an AWESOME, awesome house and property, so I can't argue...I mean, I don't want to move but. We're going to be putting an offer in on it, so possibly moving soon.

If we don't get that house, we're staying where we're at. For good. So either we're moving or we aren't and that'll be the end.

Tomorrow a friend is coming from Chicago. I'll share more on that later.



19 July 2009

Seattle Aquarium

Okay, so yesterday was very fun. We had friends over for a BBQ, with some super funny conversations lol. And Yeah, yesterday was fun.

Then todayyy, we went to the Aquarium. It was SOOO FUN!

We got there about 10, and wandered through the exhibits. I did end up using my chair, because we had no idea how crowded or hot or stressful it might be. It was a bit hard for me to maneuver in some spots, but it actually wasn't the fault of the aquarium, more the guests there. Most people were very polite, and I wasn't pushy by any means....I probably could have actually spoke up more.

I think my favorite exhibit was the Pacific Coral Reef. And the jewel tanks. My second was River Otters...they were VERY playful!!

I got a little magnet-clip seal as a souvenir.

After the aquarium, we went looking for lunch. The first restaurant we tried was called the Crab Pot. I'm sure they're usually very good, but they were inconsiderate when trying to seat us so we didn't end up eating there. They tried seating us at a table for 4, in the middle of a crowded dining room. The waiter suggested I sit at the end of the table! If the table had been bigger and in a larger space it wouldn't have been an issue. But I would have been in the way of the other customers, if I had sat at the end my chair would've been up against another diners'.

So we went to Steamers. Very good food, friendly wait staff.

Thennnn....Home. All in all a very good day.

And I hope we can do it again!

And now I'm maybe going to go on a walk.


17 July 2009

Too hot for me today

It was wayyyy too hot for me today. It got up into the 90's and was about 80 in the house. I basically spent the day in bed or in the cars. (The cars are cooler =P)

Ummm, Roo went home today! I really enjoyed the opportunity to watch him, because it gave me some insight as to what it would be like to raise and train my own service dog. He wanted to be either outside (Boomer didn't eat him!!!!) or with me. And if we were sitting outside for more than 10 minutes, and I came in, he'd follow me.


I didn't get much done though as far as chores or anything. My big toe, right foot, keeps getting infected. This is the second time in two weeks. Now, we've been trying to deal with nail related infections at home and for the most part we've been able to. But the nail is just NOT happy. So, may have to go see Dr. S about removal, antibiotics...IDK yet.

We heard from Dr. P today. I was supposed to be getting the spinal tap I need for Stanford at MB, but he informed us today that the hospital doesn't have to capabilities to ship the sample. And, it's understandable... the CSF has to be frozen to -80 F within 30 minutes of the draw.

So, we're going to call Stanford again and see if they have worked with any doctors in the area who have drawn AND shipped samples to them before. If not, we can wait until we go down in October...it's another diagnostic test, and it may change my treatment, but right now I'm doing okay. So it's not as big a deal.

Annnnnd. Yeah. Okay, long post, WELL overdue.

Probably more tomorrow. We have friends coming over, then Sunday is the Aquarium!!! EEE!!!
And And And, I might not have to use my chair! Depends on how I'm feeling and how hot it is and and and lol

Bye now

14 July 2009

Fed up

I'm done. I'm seriously, completely and totally fed up.

For the last three days Ash has been promising me we'd go for a walk. Now, she doesn't want to. I know it may seem like such a trivial thing, but it isn't.

I can't go for walks whenever I want. If someone doesn't feel like taking a quick stroll around the block, oh well to me. However, if Ash wants to go stay at her friends house overnight or go for a 30 minute bike ride, that's all fine and okay.

I understand that I've got issues that make things more difficult. I understand that yeah, I've been to the ER WAAAY too many times.

But I am so over not even being able to take a nap without someone checking on me. My bedroom window is screwed shut. It doesn't open. I'm pretty sure, I'm not leaving the room, and no big scary monsters can get me. I don't need to be checked on.

I'm frustrated that I can't take a shower without someone coming into the bathroom and checking on me. Yes, I've had an episode while I was taking a shower. ONCE. I was fine. I don't take long showers. I was also not on the greatest meds at the time....in fact, I don't think I was on any.

If I don't answer someone when they call because I'm tired or, God forbid, I've been listening to music and they can't hear me, then I'm in big BIG trouble.

I get nagged about my school work. I WILL FINISH SCHOOL! I want nothing more than to finish high school and get into college. I know what needs to be done and I'll do it. I don't need the motivation. How about you focus your energy on Ash or Tori? They need a push too.

I need a break. I need a break in the worst way. I need to feel like I have SOME level of control over my life. I'm going to be 18 soon, and I feel like I'm 5. I'm not asking for someone to hand me the keys to a car and say "go for a drive." I'm asking to be able to do simple, everyday activities without someone holding my hand every step of the way.

Sorry. I needed to vent. It's been a rough day.


12 July 2009

Winnie the Pooh!

I had much fun today with Ms. E!!

We went to a Starlight Great Escape, a Winnie the Pooh play put on by a local kids' theatre.

It was a super fun, super cute play. And the kids were great, they all seemed to know their lines, and I only noticed 1 slip up. (I'm looking from the eye of a former stage worker, not being judgmental)

So it was cool. Then we came home and ate linner at Panera.


Tomorrow morning she's bringing Roo over. I'm going to be watching him for the next week, which will be fun. It'll kind of give me a look into what it'll take for me to really be responsible for my own dog. Like, I'm responsible for Boomer, but, everyone in the family cares for him. With a service dog, it will be only my job to take care of the dog, unless I'm unable to.

So yeah.


10 July 2009

I'm running out of good ideas

For blog post titles.

Anyways, Ash and I just got back from a long walk. It was fun!

But hot...yeah.

And we had a cool moment on SBW earlier today. A special guest signed on earlier. It was very nice of her, and I just thought I'd put that down.


Bye now.


08 July 2009


Ash and I got back from a walk a bit ago. It was fun, and the park we went to had a see-saw =D

Yup, it was fun.

And...I think we're going for another walk tomorrow. Cause she's cool like that.

AND. This weekend I'm going to a play with Ms. E for her birthday. Not paid for by me, because it's a Starlight GE event, but I'm paying gas. I just can't drive her there lol.

So yup.


06 July 2009

I'm positive.

We just got the results back.

I'm positive for the HLA marker that 90% of people with Narcolepsy with Cataplexy have. Now, 20% of the general population have it as well, so it's not a diagnostic test for sure. But, there is the possibility of me having Narcolepsy w/Cataplexy...

I think now from here is the spinal tap to test the level of hypocretin in my CFS.

I'm scared out of my mind.

But, one step at a time.

That's all for now I think,


04 July 2009

Yay for Independence!

Day, that is.

Yup, it's the 4th of July.

In 1776, John Adams wrote this in a letter to his wife, Abigail.

"The second day of July, 1776, will be the most memorable epoch in the history of America. I am apt to believe that it will be celebrated by succeeding generations as the great anniversary festival. It ought to be commemorated as the day of deliverance, by solemn acts of devotion to God Almighty. It ought to be solemnized with pomp and parade, with shows, games, sports, guns, bells, bonfires, and illuminations, from one end of this continent to the other, from this time forward forever more."

He was off by two days. But, we do still celebrate the holiday with "pomp and parade" as he wrote.

He also wrote, in that same letter, that he is "well aware of the toil and blood and treasure, that it will cost us to maintain this Declaration, and support and defend these States. -- Yet through all the gloom I can see the rays of ravishing Light and Glory. I can see that the end is more than worth all the means."

Soldiers of every generation have fought to defend and support our country. In history, it was on our own soil. Now, today's soldiers are overseas fighting, still for our country and for the independence of others.

John Adams thought the end was worth all the means. It is. I get to go celebrate this holiday with family and friends, without worrying about things like my freedom.

Keep in mind it wasn't always this way, and please keep in mind the men and women overseas and those away from their families today. It's one more holiday and one more set of memories they don't get to have.


03 July 2009

mmmm....Red Robin

We had Red Robin for dinner and it was nummy!

So yesterday. Was busy, but good.

I got to Blake and Nick's early, and the day was pretty low key. It involved a lot of driving, but not a lot of excitement lol. I had fun though. I love going over their. And L is such a cutie!

I DID try to nap this time, but was unsuccessful. I had an episode of what I *think* is sleep paralysis. I obviously can't say for sure, but. Anyways. It sucked, and I didn't get any sleep, and I felt a bit rattled for the rest of the day.

Blake and I ended up picking up my mom at the train (popo fain in L speak) and going to our house. Then to dinner, Blake and L and Mom and I. Yup, that was fun!

Umm. So yeah.

Today also not much, basically housework and trying to keep cool. But we did go out for dinner =D

Tomorrow we're going over to a friend's house for the holiday. It'll be fun. They have a very nice view of the Sound, and you can see all the fireworks from the different areas.


01 July 2009

Farmer's Market

YESTERDAY, I went to Blake and Nick's for the afternoon so Bro could have some free time.

It was VERY fun. I don't often (ok, almost never) get to run after a small child with bundles of energy, so it was a good workout. And, I slept really well! We walked (rolled) to a farmer's market about 6 block from their house. It was a longer distance than I'm used to all at once, but it actually wasn't that bad. We rested enough in between that I didn't struggle from weakness or tiredness on the way back. And, yeah. I just had loads of fun. I'm going over again tomorrow!!!

Today was fun as well. I didn't use my chair going into Kris's, which was cool. She was surprised to see me without the chair. We also sat outside, which was fun. A bit windy, but it was still fun.

So yeah. Tomorrow I'm going to Blake and Nick's in the morning.

OH! I signed us (family) up for a Great Escapes today! We're going to the Seattle Aquarium on the 19th. SO excited!